Thank you all for your advice, really appreciate it.

Today Im having a bad day. I have this awful pain up in my backhigher than usual. Id say parallel with my elbow or above, so not so much my lumbar. Its like a dagger in my back, havent experienced anything this high up before. Im wondering if maybe the lead is doing it? gosh this is all I need. My husband thinks Im overdoing itbut Im not really. Ok I did take one of our dogs (a Westie) who bless him had a hip operation 2 months ago too while I was in hospital. He is hobbling along and me following behind. But I know its not from that because I was exceptionally careful. My Dr did say I could do it, but gently, which I have. Im feeling really low today with this pain. I feel Ive stepped back a bit. Ive my stim on full tilt (well what my body will allow) to see if it will help this pain, but its much higher up!....any ideas?

Thanks guys

Welcome GoRockies and thank you for chiming in with helpful hints re the generator/battery!
Go Rockies,
Mark56

Hi Jackie, and I am sorry to learn of your piercing pain high up. I have not had high up pain since the healing of the laminectomy site for implant of my stim. As I recall, yours are percutaneous leads, so I don't have much by way of personal input, unless you twisted too much or some such! Give it a rest and see if that subsides. Here is hoping it does! If not, you may need to get in to the Doc to have them opine on it.

Mark56

My Dear Friend
I'm sorry to hear of your bad day. What you describe sounds hauntingly familiar. We both have the exact same procedures. Does this pain feel like it's coming from your mid-back close to where the incision for the leads is? Also, do you notice a strange sensation in this area when you turn on your stimulator?
I have been dealing with this and the way I describe it is like a 'pulling' sensation when I turn on the unit. I can feel a little 'knot' up there where the leads were placed thru the incision. When you said it feels like a 'dagger', that caught my attention!
The really strange part is that I only feel this when I try to use 2 out of my 3 programs. It almost feels as tho one of the little anchors on the lead is pulling at the muscle. It's so uncomfortable in fact, that I've only been using the one program that this doesn't seem to affect.
From what I've come to believe is that the other 2 programs (which cause the pulling feeling) are somehow using shared electrodes and the one program that does not cause any painful sensation is coming from a lead which does not use the electrodes the other 2 programs use.
I haven't had this confirmed yet and I ended up canceling my tweak session a couple of weeks ago because I was not able to make the appointment at that time.
Try turning your unit off for awhile. Maybe 10, 15, 20 minutes - then turn it on and see if you can 'feel' the sensation I describe where your incision is in your mid back. Or even if you don't feel the exact sensation I describe, just see if your pain subsides after your unit has been off for awhile.

I doubt this is anything for us to get too uptight over, but I do know that it can bring us down. It IS frustrating. I've had many highs and lows here as of late, but now that I've ditched the Neurontin, I can already tell that my mentality is starting to even out.
I've had my unit for 6 months now. During this 'Neurontin' mentality, I have allowed myself to slip into some sort of fear and doubt about whether or not the SCS is really going to get back my quality of life. I'm still struggling with trying to figure out where I stand with all of this and I have hesitated to post about this because I didn't want to bring everyone else down.

I'm going to start a new thread and try to target people who have had their units for longer than we have and see if they will give more input. I really wish they would participate more! My only other option is to have to scout out other patients from different venues to get better feedback on those who have longterm testimonies to help us with.

Hang in there my friend, I too have been very down about several things.
Not having answers and the fear of the unknown. It's been a battle lately to not completely lose my joy.....but I'd like to be able to put the blame on 'bad medicine' and move on.
We'll stick together and get thru this
Rae

Hi Rae

Thanks for you thoughts. Im sorry to hear that you also have this 'dagger' feeling in your back. I dont however have the 'knot' which you mention, which doesnt sound too pleasant either. The pain is located beside the incision wound for the leads insertion. Its painful when I move or turn or bend so Im thinking that maybe it could be the lead hitting off somethingbut then Im thinking well its now 8 weeks today since I had surgery and shouldnt those leads have scarred in by now which means they shouldnt move. How confusing. Well Im going to give it another few days and over the weekend. If by Monday, my Consultant will be back in his rooms on Monday, I still feel this uncomfortable 'dagger' in my back I will certainly contact my Dr and see what he thinks. I did take some extra painkillers yesterday to see if it would subside, but its still there today

Rae Im so pleased that you have finally gotten rid of the dreaded Neurontin......Im so glad you are feeling more 'yourself'. I remember those dreaded meds and Lyrica I felt constantly hungover and I couldnt remember things I did or what I was even talking about, I was soooo confused while on those. But as soon as I finished it was as if the fog had lifted and I was able to feel more 'alive' . It certainly makes you become more normal again and not so fogged up.

It would be great to have some more people on here who would have their stims longer so that we could pick their brains, however, between all of us at the moment we are certainly hitting all the right questions and worries. Its amazing how we can pull together and help each other out.

I remember when I was first introduced to the SCS I was given a DVD to research. So on this DVD they talked about a forum for discussion which might be of benefit. I of course was very interested in this new system and decided to go on this forum and see what people had to say.
Well Im sure you have guessed by now, the site was FULL of people with positive remarks about the ANS....naturally as it was an ANS forumNo matter which thread I went on, there was absolutely NO negative posts whatsoever. Which I did think was quite odd. But then of course I realised that this was a PRO SCS forum advertising for the company. So its interesting to come on to this website and see both the good and bad side of the stim. Its more real compared to what I was on. Its so beneficial to anyone who might be in the early stages and want and need advice.
So maybe Rae if you do decide to start a new thread we may get some more people out there who can contribute to this great website.

Take care and thanks

Jackie

Jackie,
Ever since you shared your experience with the Neurontin/Lyrica, it has really helped me to see in terms of a possible 'bright' future...
I mean it! There for awhile, I was really beginning to believe that this is IT. The end of the line. And it certainly is NOT what I thought I'd end up! I had higher aspirations in life.
You have an aura about you which shines like a beacon from across the sea!
You seem happy with where you are at (just turning 50) and enjoying your precious grandaughter. I'm pretty much riding your coat-tails and I'm picking up on your positive vibes! I'll be "Nana Rae" in 2 months! I have aLOT to live for and I just want to be at my best. My daughter needs me! I WANT to be able to be at my best!
So, your 'bad medicine' experience has helped me to see that this was only a bad chapter in my life. I can make the most of my 'new' chapter.

You really are precious and I hope you know that!!

I will be very interested in what your doctor has to say about this discomfort in your back.

Yes, trying to find 'real people' feedback was not an easy thing in the beginning of this endeavor. The only websites I could seem to land on were 'commercialized' and didn't seem genuine.
WE are GENUINE.
I am so very grateful for what we have.
I come to this forum like good medicine! It really is therapeutic. Even just sending a smile to someone - lifts my spirits.

I hope your weekend goes well.
Even if the pain subsides, maybe it would be a good idea to bring it up at your next visit just to see what doc has to say.
I will do the same.

Thank you for being YOU
Rae

Jackie, I am so sorry that you are still hurting, and I know that feeling like the stabbing because it happens when my stim is hitting places it should not be. I was debating on whether to comment because I feel like I don't want to make things worse for anyone and since my stim is messed up I feel like I really should not be giving any advice to anyone. But, I do think you should def tell your doctor, and your doctor too Rrae. The only time I got the sharp pains is when my leads moves OR also when my settings are not hitting the right place and I need to be reprogrammed. When I look through everyone's threads and experiences I am shocked at everything you all can do because when I first got mine, I was not allowed to do hardly anything and even though I was extremely careful as you know things still happened I am not saying this to scare anyone but I just want to make sure that everyone is very careful about not overdoing it (especially when you start to finally feel better because the stim is working so great and you think you can do anything ). I really think its important to keep track of any pains whether major or minor so that you can tell your doctors and your stim reps. Again, not trying to scare anyone its just you do not want to end up like me and be on your third stim surgery Take care and I hope you get to feeling alot better very soon 'sTara

OH MY GOODNESS......Im getting such a BIG HEAD now Rae

Im so glad that my little input is helping somewhat.

Today Im feeling a lot better. The 'dagger' doesnt seem so bad now, as Im taking some anti-inflammatories as well as my painkillers. At the moment I cant see myself dropping those meds....but I will wait til I have the next app with my Rep. my Dr will also be there so we can discuss it all then. At times when I turn swiftly it catches me slightly. But its definitely better than it was on WednesdayWhich is a relief, because at first I thought I had maybe caused some damage, or worse still that the leads had movedbut I think its not that bad, well now thats its not so severe that is. Stim is definitely helping my legs and the burning and searing pain down them, but unfortunately Im not feeling it so well in my back. That heaviness is still there, but you know 50% is a whole lot better to cope with rather than 0%.....I know its still early days so Im hopeful that things will continue to improve. Ive just had a call from my GP to say that Im anaemic!!!!! great!!!!!....I had some blood tests done on Wednesday and apparently I have a low blood count ......8 Im told!!!! again!.....it should be somewhere between 11 - 16 So now Im on some Iron tablets and some multivitamins to boost me up!I will be jumping around the place soon

Tara you neednt worry about the information which you share with us. Its all valuable whether good or bad. We do NEED to know all the pro's and con's. If we were all to be positive all the time, wouldnt it be strangeso yes continue with whatever you have to offer whether you think it might scare us or not. Your imput is so important to us all



Jackie

Forgot to mention that when I saw my dr. yesterday and told her I still felt very sore and quite a bit of inflammation around the battery sites, she said it was due to fluid build-up that happens when they do the surgery and that it should go away, slowly, over time. Got me wondering if you're experiencing some bad inflamamtion??? Maybe you did something to aggravate the area without remembering/realizing it??? Just a thought.

Yes Fiona I think thats exactly what I have. My husband said that the site around the battery is still bruised and slightly swollen. I think thats why I feel it quite tender, which of course would make sense. Also when I first came out of hospital I couldnt get my jeans near me, although I was wearing sweat pants as I was told to wear loose fitting clothes. But even trying on my jeans I was soooo swollen. Now I can wear them......so swelling has gone waaaayyy down which is good. But yes I agree that definitely would make sense. Thanks again